Just around the time the ALS Association launched their inspirational ice bucket challenge, the Crohn’s and Colitis Foundation started their own social media campaign and PSA called #IBDSelfie. The goal? To help convey the true, real-life story of what’s it’s like living with Inflammatory Bowel Diseases (IBD) — specifically ulcerative colitis and Crohn’s disease.
They’re asking anyone impacted by ulcerative colitis or Crohn’s disease — both chronic, autoimmune diseases with no known cure — to take a photo of what living with IBD looks like for them and share it with CCFA.
So here goes.
This is my #IBDSelfie.
Since 2002, I have taken a cocktail of pills every day to keep my UC in remission. Up until last year, when the formula of one of my medications changed, I was taking 12 (yep, 12) pills a day — a combination of immunosuppressants that I jokingly refer to as my “magic bullet” because I’ve only really had one flare in the 12 years I have been living with UC.
I’ve become sort of immune (no pun intended) to taking my pills. They’ve just become part of my normal routine. I gulp them down — yes, all at once — at bedtime. Sometimes my husband watches me down my meds like a pill addict and shakes his head in amazement that I can swallow them in one fell swoop with a single sip of water.
But this is my reality. This is my IBD. Well, that, and colonoscopies every three years, and the inability to accept live vaccines, and the need for yearly skin checks, since one of my meds leaves you more susceptible to skin cancer.
Yet I was reluctant at first to share my #IBDSelfie. Because when I saw the other pics my fellow IBDers were posting — people of all ages, all races, all genders, hooked up to IVs for Remicade treatment and talking about colostomies and bravely showing their scars — I felt guilty. Guilty that I’ve someone managed (thus far) to achieve remission and avoid that fate. That my #IBDSelfie will seem like bragging, that I’m rubbing my remission in the faces of others who are not as fortunate.
Because I know I’m lucky to be in remission.
However, I decided I’m going to share it. Because this image represents my experience, my journey so far. 1.4 million Americans have IBD and we experience our disease in 1.4 million unique ways. And if our community can unite to spread the word about the silent yet debilitating disease and help others understand what it is like to live with ulcerative colitis and Crohn’s disease, then it will have been well worth it.
Because the only way we can eliminate the stigma associated with IBD, and make progress when it comes to finding a cure, is to talk about it. To share our stories.
I’m Jessica, I’ve been living with UC for 12 years, and this my #IBDSelfie.